If AIDS truly is a manageable disease, why is Julian Aynsley in toxic shock?
As we near the end of the 25th anniversary year of the HIV pandemic, one word seems to dominate much of the media coverage: manageable. AIDS, we’re being told, is a manageable disease. As if it’s something relatively innocuous—like a sunburn or the hiccups. I recently discovered otherwise when, after six years, my medical practitioner and my meds stopped working simultaneously.
For the first time since my diagnosis, a distinctly unmanageable trade-off presented itself: choosing between a whole new menu of side effects and the perils of a life without meds. Furthermore, I missed the easy rapport I’d had with my first doctor; I was hesitant with his successor, since my sense of humor can seem irreverent at best. When my new doc explained my med options (and their side effects), the exchange went something like this:
“How about this med? It only causes deepening pigmentation.”
“That doesn’t sound too bad. I’m like Woody Allen—I don’t tan; I stroke.”
“It’s not like an even tan, though,” he said. “It affects the palms of your hands and the soles of your feet and possibly other spots.”
“You mean like one of those Trills on Star Trek? What else you got?”
“One with flulike symptoms and a severe rash.”
I then quoted Peter O’Toole playing King Henry II in The Lion in Winter, who bellowed:
“There’s no sense asking if the air’s any good, when there’s nothing else to breathe!”
“I’ll take that as a no,” he said. “Well, there’s one here that can cause jaundice—but it usually goes away.”
“Usually” wasn’t terribly comforting, but I could see that he was trying. And at least the effect would be distributed evenly. I thought that if I added an artificial tanner, maybe I could deepen the result into something sultry.
“OK,” I said. “We’ll mark that down as a ‘possible.’ Next!”
“One that elevates cholesterol?” he ventured.
“That doesn’t sound too healthy,” I countered.
“Bloating? Stomach problems?”
“Nope.”
“Nausea?”
“Been there; done that.”
“Headaches?
“I’d rather go with the spots.”
“Nightmares, depression and hallucinations?” That sounded vaguely like a law firm.
I reflected that after the psychodrama of the past half-decade—my diagnosis, plus full-blown AIDS, cancer and their ensuing treatments—a “mere” nightmare might be entertaining. Besides, I hadn’t had a good hallucination since the ’60s. But I had to come clean.
“I have to point out that I’m a writer and don’t work well when depressed. Isn’t there anything else?” I was beginning to worry that he might be starting to consider me “hard to please.”
“There’s one more,” he said. “How do you feel about kidney stones?” “I’m fond of my kidneys,” I replied. “I wouldn’t think of stoning them.”
“In that case,” he sighed, “I’m afraid we’re out of options.”
“You call those options?” I asked. I suddenly realized the irony that all of these side effects were things that I would normally be seeing him to get rid of. I mean, it’s true that when death is a disease’s No. 1 side effect, any other symptoms may seem comparatively minor. But “manageable?” Please. As a child, I never imagined growing up to become a chemical dump. Worse, this litany of miseries seemed to come with an annual cost that surely exceeds some countries’ GNP.
However, I did spot one I probably could control. “OK,” I said. “I’ll go with the high cholesterol. I’ll just have to drink more red wine. A good merlot can control cholesterol, can’t it?”
At this point, I’d have asked my previous doctor if I could deduct my wine cellar as a medical expense. But I’d worked hard to find this new guy and didn’t want to appear too flip too soon. He was speechless but eventually agreed that, yes, wine was cholesterol-friendly. And boy, did I need a drink.
